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How the quest for three hearts linked three families forever

The families of three children who needed new hearts have found new lifelong friendships from their experiences at the Hospital for Sick Children.

Three families became lifelong friends after first meeting at Sick Kids
in early 2011. They comforted each other when they found
out all three kids would need a heart transplant to survive. And they
were there for each other when the surgeries took place. (Aaron Harris / For the Toronto Star)

Heather Potts holds her daughter Evelyn, who had a heart transplant earlier this year.

By Noor JavedStaff Reporter

Sun., Dec. 25, 2011

The doctors weren’t sure it was such a good idea, but Ashley Stinson, 10, had made up her mind.

She wanted to be at the Hospital for Sick Children to support her new “little brother,” 3-year-old Grayson Gillespie, during his heart transplant in June.

She also asked to be there five days later when her hospital roommate, Evelyn Potts, 1, received a new heart.

Her family worried that if things didn’t turn out well for her two young friends, she would be demoralized if and when the time came for her own heart transplant.

Ashley had developed cardiomyopathy, or heart muscle disease, and the fatal threat of heart failure loomed.

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“I could not keep Ashley away,” said her mother, Michelle Stinson. “She stayed there until the doctors and surgeons came out and said they were okay.

“It was a hard decision, but it was something she had to do for herself.”

Then on her 11th birthday a month later, Ashley got the news that she would be getting a new heart, too. The day of her three-hour surgery, Grayson, Evelyn and their families waited outside the operating room with the Stinsons until it was over.

“It was an immense support to have them there because they had been through it, and knew the risks involved,” said Michelle.

The three families became lifelong friends. They first met at Sick Kids in early 2011. Their first conversations included talking about fears that their children may die. They comforted each other when they found out all three kids would need a heart transplant to survive. And they were there for each other when the surgeries took place.

“They are our transplant family,” said Natalie Gillespie, whose son Grayson was born with hypoplastic left heart syndrome, in which the left side of the heart is underdeveloped. “We had so many ups and downs, but I don’t know how we could have done it without them.”

And over the roller-coaster year, the friendship developed through happy moments, and sad ones.

Like the night Evelyn’s temperature spiked — forcing doctors to ask her mother, Heather Potts, about what to do if she needed emergency treatment. Like Grayson, Evelyn had also been born with hypoplastic left heart syndrome.

“I was alone with her, and was panicking. I called Natalie (Grayson’s mother) who was staying at the Ronald McDonald house and she dropped everything and was at the hospital in five minutes,” said Heather. “She came over to hold my hand and cry with me. I don’t know what I would have done if she wasn’t there.”

But most times, it was about the little things.

Like making dinner together at the Ronald McDonald House, going for walks and just relaxing after a long day at the hospital.

“It helped to give you that sense of a normal life, even with all the craziness going on around us,” said Heather.

Now months later, the families still keep in touch despite being spread out between Peterborough, Gravenhurst and a town near Ottawa.

There are text messages and phone calls and occasional get-togethers. They keep track of each other’s hospital appointments and get health updates as the fear of organ rejection lingers.

“We have been so blessed through this experience,” said Natalie, Grayson’s mother. “We were all really blessed that we were able to get hearts, and that all the kids are doing well,” she said.

“We are all so blessed that things worked out.”

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